It's my wonderful husband.
He was always a little upset about the lupus dx, very worried, but ok about it. Always wanted me to get more aggressive about treating it.
It wasn't always possible, as we went without Medical Insurance FOREVER, but finally now able to go after it with the big guns.
Well, this on the heels of the worst flare ever (lasted abou 6 weeks and still hangin in, though we do think it's fading....will know more after next rheumy visit)
The thing is, he's always been so strong. I'm not one to cry or beat my breast or complain unendingly, but through hospital visits, scary times and misdiagnoses, etc, he has been an OAK! What can I say, after 11 years I adore him still. Flaws and all.
He is falling apart on me now and I am having trouble handling it. first with my Hair...he bawled like crazy. Ok, I can handle that. Now he's overmanaging my meds (COUNTING THEM, for god's sake...I can't STAND that.) but he's also bursting into tears all the time and generally saying fatalistic and scary (to me) things...because THIS IS NOT LIKE HIM.
The doc put him on atnidepressants (which he will take) but also on mild anxiety meds (which he won't take because he says they dull him too much at work...even when he breaks them in half.)
I know it's selfish, but I can't BE strong right now. I just hurt in too many places. And I canNOt handle him falling apart when I can't be strong. I try to tell him this (gently) and I feel it just puts more pressure on him. You can't DEMAND someone be strong for you.
I don't want to suggest couseling. He can't take the time off work, and it's expensive. He is VERY educated about the disease and VERY involved with my doctors.
God, I'm so ashamed, but I just want my old strong husband back. I feel so guilty and selfish. I am the entire reason his life sucks right now. Medical expenses and financial troubles? I am the cause. Emotional worries? Me again. Physically intimacy is tough right now, though we do cuddle...and he ends up in tears, which makes me feel worse. I never wanted this life for HIM. He didn't sign up for this. And I just feel so GUILTY!!!Can anybody else relate? Give advice? Send me an angel?
Speaking of guilt, I even feel like I "take" more on this wonderful board than I give. Oh,,,oh....oh.... :cry:

MARYCAIN

10-30-2006, 04:52 PM

Oh, littlered, lupus is a family disease, in some ways it's harder on our loved ones who have to watch and worry than it is on us. A lot of what you're describing in your husband sounds like post traumatic stress, which wouldn't be surprising after everything you've been through.

Does he have any close male friends to socialize with? Much as you two may love each other, you both also need "me" time, and your lives cannot revolve around your illness or you will both become bitter and resentful. Encourage him to go out with some of his friends to a football game or hunting or something else he enjoys, and maybe invite some of your friends to stay with you during that time. Sometimes just getting out of a situation for a little while can ease the stress a bit, and if he sees that you will be okay if he's gone at times, he may ease up on the overmanagement and control issues. Much as the pill counting may drive you crazy - it's better to just let it go and let him continue if it makes him feel better. Men want to approach things like illness logically, and this sounds like his way of doing it. Just be grateful he hasn't bought you a watch with medication alarms yet - that was the point where Michael almost tipped me over the edge!

Remember too that an oak tree can break in a storm -think of your husband instead as a willow, a sturdy tree that bends without breaking.

It sounds like counseling might not be an option right now, but does your church offer any type of counseling or men's groups he could attend? The more people he can talk to freely, the less stress and frustration he keeps inside.

It's also important to keep your relationship husband and wife, not patient and caregiver. So try to have an evening out or a "date" at home - call Steakout or a nice place that delivers, put on a good tablecloth and light a candle, turn down the lights - magically, you're teenagers again.

If there is an Arthritis Foundation chapter in your area, they have free courses for couples in learning to live with arthritis, including maintaining a physical relationship. Not to go beyond g-rated here but you know what I mean. They also usually have spousal support groups. You will probably find some lupus patients in these groups.

I wish I had a magic answer for this problem but we both know there isn't one. It takes patience and acceptance on both sides, and a sense of humor too! The one thing you shouldn't feel is guilt. This is nothing you did - nothing you can control - it just happened. It's like feeling guilty when a tornado blows your house down - why blame yourself instead of the tornado?

Lula2ya

10-30-2006, 05:05 PM

Hey littlered,
I'm sorry to hear about your hubby.. I have some advice, you can take it or toss it, hopefully it'll help. Lupus effects more that the one who has it. It effects the entire family. May I correct you when you say your husband didn't sign up for this. He did when he said "I do", remember the vows in sickness and in health. Just like you signed up for being strong for him when he needs you. He knows he signed up for this and he loves you a lot obviously and that is why he is having trouble right now. We are ALL guaranteed to have problems in this life. 10 out of 10 people die. None of us are guaranteed a tomorrow whether we have lupus or not. I know you aren't demanding him to be strong but you should just let him crumble if he has to. If you focus on him you may actually feel better. That can be very healing to you believe it or not. He needs you right now just like you need him so hang in there littlered. It will pass, He's just working through some things right now. I'm sure he's scared. Lupus can be scary. I've experienced having the hubby fall apart when they are so strong most of the time but, in a way it's been a good thing for me because I know how truly deep his love for me is, he sees me suffer on a daily basis and it hurts him because he loves me. He'll be ok. Hope I helped.

lupusgirlstefanie

10-30-2006, 05:26 PM

Hi Hun

I am so sorry that you are going through this, But you must never blame yourself it is not your fault that he is having a hard time, it's not your fault about finacial stuff or medical bills. You never asked for this disease and it's not right for you to blame yourself.

It must be so hard to watch your husband feeling like that but that's probably how he feels when he sees you ill and in pain. I would suggest talking to him about it and counseling sounds like a good plan, doesn't most insurance companies cover some counseling? First thing first sit down and try to talk it out with your hubby and discuss a plan of action like counseling.

Also talk to your doctor about it they are also great at recommending someone like a counselor. And they would know about what medical stuff are coverd like certin cousneling.

Having lupus doesn't just effect the patient but the whole family and it's tough really tough. But remember your husband said he would be with you and love you for better or worse in sickness or in health, and this is just a sicknees part of your life right now.

Hang in there and please feel free to PM me anytime you need to, we are here for you.

Take care hon

littlered

11-08-2006, 11:56 PM

Hubby is getting back to "normal" (whatever that is.) He loves online Mafia games (it's a guy thing) and had stopped playing because he felt guilty for not being with me in the same room. Well, I insisted he continue with something he enjoys so much.
WE are also reaching out to our friends more. they come to dinner and bring something, so do we. And last night I lit candles, made my pumpkin soup and cheesy bread, and we listened to music all night. It made things better.
You are right, we have to get out of the constant caregiver/caretaker mode. WE were friends first, then lovers, then partners. We will go to the movies this weekend. I have something shocking planned, but it is not Grated so I can't post it here. NO it's not illegal or immoral, but it will definitely remind him and ME of the woman he fell for.
thanks for lettling me vent and giving me your ear and your good advice. We will get through. He needs to fall apart too, sometimes.

MARYCAIN

11-09-2006, 06:57 AM

Keep that romance cooking!

mnjodette

11-09-2006, 08:18 AM

Littlered, I can't tell you how much reading your postings have helped me. Don't ever feel like you take more than you give on this Board. Sharing your experiences is a way of reaching out to all of us, even when what you're reaching out for is help. I'm so new to this, everything scares me. I hear my husband crying sometimes at night (and he prayed with me, for the first time in our 30 years together...wow!) He's scared, too, and it's so hard for him to admit it. Reading what you've gone through helps me to keep things in perspective, and lets me know that I'm not experiencing this alone. Sometimes I don't respond or post anything...I just read and learn. But please know (all of you!) how much I appreciate your good insight and willingness to share the hard stuff. It's a blessing to me each time I log on.

Jody

psalm 56 3

11-09-2006, 11:03 AM

It is beneficial for all of us to post and reply. I know my husband has been living in denial. He will always say to me, "There's my healthy wife." He tells me that nothing is going to happen to me because I am so healthy. I feel for him because I know it would kill me if the roles were reversed.

I went to the dentist about a week ago. He put me on penicillin because he was working close to a nerve and wanted to take no chances. I thought nothing of it, but for the past few days I had been having a hard time breathing. Its not something you can hide. Bobby asked me about it and I told him it was from the weather changing, (it became very warm and humid). Then I read on this site that penicillin can effect our condition.

Also I did not think it was very important to inform my dentist that I had Lupus. Shortly after he gave me a shot of Novocain I started noticing my heart racing and breathing was strained. I asked him if Novocain can effect someone with Lupus and he shot back YES! I told him after the fact that I had Lupus. They kept me in their office until the effects of the Novocain wore off. So that is another thing we need to look out for.

littlered

11-09-2006, 11:05 AM

OH thank you! I do feel like sometimes I come on here just to whine or ask advice....I am Catholic, lots of guilt just ready to jump on me!!
You all bless me more than you know. If I ever can, I intend to invite EVERYbody to a big dinner made by ME just to give the love back that you've all given. by the way, feel free to IM me anytime. Email me (klopez3@hotmail.com) and I will tell you how. Love, Kathy

MARYCAIN

11-09-2006, 11:46 AM

It's important to tell any health care provider that you have lupus - doctor, dentist, even when you get your eyes checked, because everything can be affected by lupus. It's also important for lupies to stay away from sulfa-based antibiotics like bactrim or septra because they can trigger a major flare - some blood pressure medicines are also sulfa-based and need to be avoided also. So it's a good idea to also let your pharmacist know so he can keep an eye out for anything contra-indicated for lupus. Some GPs and dentists don't know about the problem with sulfa drugs, so this is something where we have to be proactive and ask questions.

Another odd thing that can trigger a flare is sprouts - alfafa, bean sprouts, mung sprouts, etc. - just one more thing to be careful about!

psalm 56 3

11-09-2006, 12:25 PM

You learn something new everyday. I have noticed that my eye sight has gotten very bad the last couple of months. It is so bad that I now have to wear my glasses most all the time. I wondered if my meds could be the culprit. I take Synthyroid, Premarine along with Naproxen and for the next 4 days penicillin.